sueliz61
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Posts posted by sueliz61
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Oh Judy,
My heart is breaking for you.
I haven't been in your shoes, but I have been my husbands caretaker for many years. I have found myself getting tired of so many things dependent upon his health. When it has gotten too much for me, I have taken a few days and gone away. This has always helped me get a fresh outlook on things.
I hope you can find some support. Counseling would be good for both of you. Are there services in Gilda's Club that could help you?
We have missed you. You don't always have to be positive.
Please keep us updated on your health and situation.
Many hugs coming your way.
Sue
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Eric
I agree completely with Judy KW. You really must attend the graduation and the parade. After the "talking to" you gave your students, it would be terrible if you did not attend.
I think we need to send you a date calendar, you are too popular and double book. I guess that is the price to pay for being such an entertaining fellow.
Sue
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Hi All and Thank you for your comforting posts.
Kurt had the 24 hr urine test done last week and the results confirmed that his kidney function is worse than the blood tests were showing. His function is now at 14%.
We saw the surgeon this morning and he is scheduled to get catheters put in this Wednesday. They want to start dialysis right away and can't wait for the healing of ports. The catheters are temporary so we will see if they need to add ports later if the kidney does not get any better.
The funny thing is that he is feeling better than he has felt in a long, long time. He has a little more energy, no nausea, and his cough is almost gone. Guess being off chemo for a month has done wonders for him (in the short run). I am not sure what the future will be in terms of treatments. I hope he will build up enough strength and healing so he can continue with some treatments.
Sue
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Kristen,
I am so sorry to hear about the difficulties and setbacks your dad is experiencing.
The dialysis should help him feel better and get stronger so they can help him fight this cancer. Hopefully this is a temporary setback.
I am sending big hugs and lots of positive thoughts your way.
Sue
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Eric
Thank you for your kind words and encouragement.
This journey has not been easy - mentally for me and physically for Kurt. He tends to leave the research and people dealing up to me. We worry in private , but he leaves it up to me to try to get the answers. Unfortunately there seems to be no right answers.
We have 4 grandchildren ranging in age from 20 years to 12 months ( 20, 16, 7 & 1). We are blessed that 3 of them live within 1 mile of us. The youngest visits almost daily and he keeps smiles on both of our faces. The oldest is in college in San Francisco and spends 1 week-end a month with us. This has kept us young at heart and very happy.
I have read all your posts and admire you greatly for all the promotional work you have done to increase awareness of lung cancer. You are such an inspiration.
I look forward to your next picture posting- I enjoy them all.
I did see a program on making haggis and that made me wonder a little about you judgment though.
Sue
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Hi all,
I wanted to post a further update on Kurt.
He has been on Navelbine - reduced dosage and bi-weekly instead of weekly.
He has been wheezing and congested, but with a dry cough.
Oct 9th - high fever and chills. I took him to ER - High BlP - kidney function worsening. ER docs say xray shows pneumonia in left lung - cancer in right lung- admit him to hospital. He was given antibiotics and O2 to help with breathing.
Oct 10- fever gone - his onc does not think he has pneumonia, that fever is cancer related - x-ray shows growth in tumor.
Oct 11 - Hemoglobin dropped to 7.1 - he received 2 units of blood. Blood pressure down to 150/96...discharged from hospital.
Oct 19th- Office visit with onc - creatinine 3.3 gfr- 20.
Oncologist wants him to start dialysis as soon as possible so he can be more aggressive in fighting the cancer.
We saw his nephrologist yesterday and he agreed that Kurt would need to start dialysis. He thinks the function is worse than the bloodwork is showing - based on the amount of muscle mass that Kurt has. He wants a 24 hour urine collection to verify the kidney function to get approval for dialysis.
He was scheduled to get a ct scan on Oct 13th. The oncologist had us postpone it - until when I am not sure.
He has not had a scan (petscan at the time) since mid July. I think the reasoning is - he can't do anything about the
cancer until his kidney function is resolved.
We seem to always be in a "wait" mode and the anxiety is maddening. I so wish that there were simple answers to
guide us. He always has like to be difficult though.(Not really, but he likes to think of himself as a curmudgeon)
Sue
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That was great Ned- Thanks
Sue
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Susan,
I am so very sorry that you have lost your Mom. You will eventually be comforted knowing that you enveloped her with your love. I am so glad she was able to go home and have a peaceful passing.
This happened so fast and you must be in shock. Words just don't come to me to express my sorrow.
Sue
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I wrote this as a post on Grace and thought that I would also post it here.
I have written to both Ellen Degenerous and Oprah Winfrey asking for some mention of Lung Cancer awareness in November.
Perhaps we should all bombard all the talk show hosts it might help to get the word out.
It seems so uncivilized and childish to be envious of all the breast cancer awareness, but I am. I am also so grateful that there has been so many advances in the treatment for breast cancer. I have 2 aunts that are survivors and my dear SIL died from breast cancer.
BUT my husband is dying from lung cancer and I want to shout at the world to help stop this terrible disease.
Sue
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Wind ( the thing that makes all the leaves fall quickly)
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Judy,
I am so sorry to hear that this is the progression that we had all hoped was just a blip in the report. CRAP!
I hope that Tarceva will be the miracle drug for you that it has been for many others .. and with few side effects.
(((hugs)))
Sue
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Leaves (and more leaves and more leaves) (We have 2 willow trees and they each have 2,000,613 leaves. I counted them!! lol)
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Judy,
Prayers, lots of positive thoughts and everything is crossed for great results.
Sue
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Randy,
You have my dream job! I love to bake, but can't even imagine doing what you do- I would probably gain 200 lbs. Great story and thank you for sharing - I need one of those danish right now!!
Judy - I am sure there could be a compromise- sticky buns would surely lead to sweet kisses!
Sue
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Susan,
So sorry that the Tarceva has most likely run its course, but glad that she is being offered new treatments.
You wanted to hear from people who are familiar with Navelbine.
My husband's treatment right now is Navelbine. He was to be getting it 3 weeks on and then 1 week off, but his blood counts and kidney function did not like that much. So now he is on a reduced dose every other week.
He has experienced drops in his blood count and nausea. The nausea can be controlled with meds if he would take them as he is suppose to take them.
The chemo session is very quick - they slowly (about 8 minutes to do the dose) inject it into an iv line.
We do not know yet how effective this is for Kurt - he will be getting a new scan mid October, but from what I have read on Ned's postings he has experienced shrinkage of his tumors.
I hope your Mother does as well as Ned and that she has little side effects.
Sue
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Judy,
So sorry about you having to get acquainted with a new oncologist. It is very hard to do this when you become so reliant on a dr that really knows you.
Also so glad that he is such a thorough dr. Fingers and toes are crossed that the nausea is a side effect of the meds you are taking to help with the muscle spasms.
I would braid my hair for you like Randy but don't think it would be as effective.
Good luck and hang in there.
Sue
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Judy,
Wow what a great break through.
It is so wonderful that you are feeling good and upbeat. Living life to its fullest is the best - no matter what that entails. You go girl!
As far as the computer problems, if you haven't thrown the mouse at the wall, you are doing good. It is always so hard to find out about all the stupid little nuances in new computers and upgrades.
Makes me hesitate to get new things.
I am so glad that this latest trip was and "eye-opener" for you. Enjoy yourself!
Sue
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Good news and not-so-good news.
We saw Kurt's onc today for the results of his petscan and latest bloodwork.
Good News: Decrease in size of supraclavicular mass to 1.3 cm (it was 2.8cm) with normal SUV activity.
Decrease in size of hilar mass to 3.5 cm - was 5 cm. Also SUV down to 2.8.
This is very good news and makes us happy.
Not-so-good News: The scan showed that he has some pleural effusion on the right side measuring 6 cm in thickness. I am not sure whether this is a lot or not. This explains the awful dry hacking cough that he has had lately.
Also his kidney function has deteriorated even more. Last week #'s were 35% function with creatinine level of 2.0. This week his function is 30% with ceatinine level of 2.3.
Hemoglobin level is 8.8 - so he got a transfusion this afternoon and will have another one tomorrow.
So the plan is to do no more chemo and see if his kidney responds favorably.
He will have a chest XRay in 2 weeks to see if the pleural effusion is better or worse. Onc wants to see if maybe it is a side effect of the chemo.
I need to go sit with him now - he is feeling lonesome. I will write more tomorrow.
Sue
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No results yet- we have appt tomorrow at noon.
I am on pins and needles , but he is pretty much sleeping through it.
Thank you for all the well-wishes.
I will let you know the results - hopefully good news asap.
Sue
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Randy
Thank you and thank you for the chuckle. Can you post a picture of the braided hair?
Sue
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Hi everyone.
The past week has been a hard one. Kurt's fatigue has actually gotten worse and it is breaking my heart. He is beginning to get panic attacks, is sob and is wheezing. His legs are not retaining fluid and the dr says his lungs sound clear, so not sure what it is about. He needs to sleep propped (?) up or he feels like he can't breath.
His red blood count is just above the line for a transfusion so that might explain the sob.
He did not have his chemo treatment on Thursday because of his blood counts and kidney function but will be getting a petscan on Tuesday. Then we can decide how to proceed. Onc originally was going to have him get a ct scan but wants to see better clarification and he can't have contrast.
I did mange to get him out this morning to watch the "wharf to wharf" race. Annual event that we have always watched with SJSU Alumni. He enjoyed himself but is "out for the count" now.
I am on pins and needles waiting until we get the results of the scan - either Wednesday or Thursday. Some of his symptoms remind me of how he was last year before dx of NHL. Onc said that he is not too concerned about recurrence because he is on chemo drugs now. But he also said that there was "no way Kurt's lung nodes would be cancer, because no one has such bad luck". At the time I told him that I wasn't superstitious but that he should NOT say that and I was right.
I have had a few weepy days, but he is so stoic and even tempered I don't know how he does it. I asked him last night if he ever feels like crying and he said -no. what good would it do. I told him that it helps me.
Maybe the anxiety pills help keep him in a somewhat soothing place.
I will keep you posted and let you know the results of the scan.
Please send positive thought and waves this way.
Sue
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That is wonderful news!! Congratulations.
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Judy,
I love the rope that Katie provided for you to climb out of your pit. And look up at the sky in that picture- it is blue and sunny with NO black cloud over your head. So enjoy the rest of your travels.
My thought and proyers are with you.
Sue
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Hello you wonderful people.
I read the posts daily and thought I would update what is happening here.
Kurt had his 5th treatment (almost half way point) yesterday and is feeling pretty sick today. He is able to eat but the nausea is pretty bad. We try to stay on top of it so I guess it could be worse without the medication.
His blood work the past 2 weeks has shown that his kidney function is deteriorating at a faster rate than it has been. He has been on a down-hill slide for over a year now. They say his warranty on the transplanted kidney is up.
There is not much data on transplants lasting over 20 years.
He will have one more chemo and then a pet scan - we can then decide how to continue.
His fatigue is worsening - drs say it is from combination of all his problems: cancer, chemo, diabetes, & kidney failure and that it will probably not get better any time soon, if at all.
We had a long talk yesterday afternoon. I told him that he has been in a holding pattern - waiting for the chemo to make him better. I want him to start making short weekly goals of somethings to look forward to each week. They can be as small as walk to the end of the street ( Monterey Bay right there), or a drive somewhere. Anything to give him things to look forward to. (hate ending a sentence in a preposition). He is still somewhat in denial, but I think he needs some quality of life instead of this waiting for the things to "get back to normal".
These past 2 years have been so hard on him and he has changed so much from the vital man that he was. We ran a sail making business together ( later changed to awnings for motor sports) and we had to abruptly give it over to our kids to run. I am thankful that they are able to take it over, but the abruptness of retirement has been hard on both of us.
I am so glad that this site is here - it helps me so much.
I will let you know the results of his scan.
Sue
Update on Husband
in MEMBER UPDATES
Posted
Kurt had the catheter put in this morning. We got a call last night from the dialysis center to tell us that he is scheduled for dialysis Thursday(tomorrow) morning at 6:15 am.
His schedule will be every Tuesday, Thursday and Saturday at 6:15 am. The dialysis takes bout 4 hours. UGH.
I spent 30 years getting to work between 5 and 5:30 most days, 6:30 on Saturdays felt like I was getting away with something. You would think that having to get up early 3 days a week would not be a problem. BUT I am not looking forward to it. The center is only about 2 miles from our house so at least we won't have a long drive. After the first time, I won't stay with him. He has gone through this before (21 years ago) so it won't be too many surprises.
We have to work out new diets for him, diabetic and renal dialysis diets are on opposite side of the menu. I guess I should talk to the clinics dietitian to get some pointers. He will not give up milk and that is one big no-no for dialysis. too much phosphorus, so I know we will be fighting each other over his diet. He also needs lots of calories because he is still losing weight. I wish I could give him some of my excess!!!
I am not sure how long he will need to be on dialysis before he can start chemo again. I hope not too long.
Wish us luck.
Sue